I have said that I would write a little about the journey we have traveled with Jack and the other diagnosis he has received: Congenital Glaucoma.
The best way that I can explain it is that somehow Jack does not like to release the fluid his eyes produce internally, the passageway seems to be blocked. As a result, the fluid builds up inside the eye. Eventually with enough pressure, it will cut off blood supply to the optic nerve damaging it. If left untreated, Jack would go blind.
It was at four months of age when I looked into Jack's face as I was nursing him and noticed a brownish tinge in his left eye. My first thought was that his eye colour was beginning to change. Both of my other children have hazel eyes. Jack is the only one who kept the blue. But as the week wore on and I watched with curiosity to see if my guess was right, I started to become more concerned. The eye was not turning brown but becoming hazy. Naturally I did what any parent with a computer would do. I went to the internet and googled "hazy lens" which led me straight to my worst fear: glaucoma. One site showed photos of babies with glaucoma and explained that because they are so young and the tissue still soft, you might notice one eye is bigger than the other. Of course I raced over to Jack to see and confirm my growing fear that his left eye did look bigger. The ball rolled quickly from there with a visit to an eye doctor, then an opthalmologist and then a direct referral to a children's opthalmologist at Sick Kids within 3 days. Now, six surgeries and more trips to Sick Kids than I can count, we are still struggling to get his eye pressures under control, two years later. His left eye is now stable but his right eye is stubborn.
Jack has been under anestetic over a dozen times. Sometimes it scares me to think of what impact this will have on his development but I try not to let myself go there. What other choice do we have? We either treat this or Jack goes blind. If God is in control of all of this, He must also be greater than the negative impact of exposure to anesthetic. Each time we have had to release him to go into surgery is as difficult as the last. It never gets easier and it is heart breaking. Now that he is older he is even more aware that he is being taken from us and I am even more aware of how much I love him and want more time to lavish that love on him.
I remember the first time he went into surgery. Such a tiny baby. How I had the strength to let him go I don't remember. Actually I think Rob had to do it. I remember being unable to hold back the tears. I cry each time. I remember being angry at the other people in the waiting room wondering how they could just casually look at a magazine or chat while my baby was in there. The hour and a half he was in there felt like an eternity even though the procedure was a straight forward one. We were not dealing with the open heart surgery that so many other families have to. But I thought to myself: Could this be it? Could this be the amount of time that we will be granted to share our lives with Jack? What if he never came out of surgery? It was in this time-stand-still moment that something changed within me. This boy with Down Syndrome, sky crasher, world ender, life turned up-side-down baby that I was unsure at first that I could live with...became the beautiful life, wonderful baby, world-filling love child that I could not live without. Yes Lord, please let me have this gift a little while longer.
It was a hard one to capture in photo. Some of the pictures are therefore a little out of focus! As you can see, there was a lot of waving of branches. So neat to reenact and feel like we were there cheering on our King with the real Palm branches. Jasmine sang the Hosanna song she learned at school at top volume and we all joined in. Levi was reluctant to have his picture taken, stage fright maybe. Jack just whipped us and everything in sight with this big fan, twice the height of him. He was not in favour of being Jesus on Jasmine's donkey back as she carried him over a carpet of branches...as much as she said it would be fun.
